Posts Tagged ‘rsv season

It’s back to school week! So far no new seizures. My little man moved up, literally to the upstairs, to the Preschool 2 class. The big goal for this year is to write his name before moving to pre-K (!) next year.

The first homework assignment this week was to fill out an about me sheet. The first few questions were the typical what is your name, what are your parent’s name. According to Drake, he wants to be a librarian and his favorite foods (that he doesn’t eat) are chicken, hamburgers and bread. I was tasked with filling out the “something special about me” section. For the first two years, I always put something about his prematurity or clubfoot and what he has overcome. This time, I wrote about his love of travel and “cations.” He is so excited to use his passport to go “to PIRATE island” in 8 weeks.

In a way, it feels like a betrayal to how awesome he is to not share that part of his story. Prematurity will always be an important part of his story, and his new teacher has been made aware of his current challenges. However, prematurity is becoming more my story and his dad’s story than his, and I am so relieved.

According to my Facebook “on this day,” 3 years ago we went back into hibernation. Drake had been out of the NICU since late March and we were on RSV isolation from March to late June because it was a bad year with numerous RSV cases. Despite his need for surgery in November, Drake still didn’t qualify for Synagis even with his doctor and us filing a formal appeal. I was lucky. My job agreed to let me work part time and mostly from home, so my husband and I were able to make it work without the loss of my entire income.

RSV isolation, especially over multiple years, is HARD. Hugs to all the families prepping to spend the winter saying “no,” using copious amounts of hand sanitizer, and praying that their child makes it through healthy and at home.

This week I am so thankful for a brave mama in my area who decided to start up a local support group.

I was usually at the NICU during the day, so I didn’t run into many other parents. I definitely had my moments of feeling extremely lost the past year as none of our friends or family had ever had a NICU experience.

That’s something the preemie internet community definitely provides as we share our stories and support each other, but it’s nice to know there’s someone close by that you could invite to coffee if you wanted to.

That’s all I’m going to say about that for now as it’s a small, private group. Anyone in the Cincinnati area is welcome to join who has experienced a NICU stay with their child though so feel free to message me if you’d like to be pointed in that direction.

I had two reminders on facebook today of WHY we have endured RSV isolation for most of his first year. My bout with Influenza A was a scary reminder, too, but these images make my heart stop and are keeping me up tonight.

One was a post on my college band alumni page about a couple who graduated a bit after me that lost their son at only 13 months old after a brief illness. The second was of one of my college roommates full-term infant son with a breathing treatment mask on due to RSV.

So even though the long, cold winter is drawing to a close and spring can be felt in the air. I will not be lazy or forget exactly WHY we are doing what we do. It’s so tempting to go ahead and take him with us on errands, but we have worked so hard to be healthy. He has worked too hard.

And my heart just aches for these families dealing with loss and illness….

All of Drake’s measurements are on the growth chart for his age! Huzzah baby Drake! Pediatrician says it is awesome that he has gotten on it so soon, and that he continues to follow his own personal growth curve.

He is grasping, putting things in his mouth, rolling over back to front and front to back and doing “mini push ups” on his own when on his belly. Sits well with support. Pediatrician was happy with his motor skills and development which leaves me hopeful for the early intervention assessment coming up at Good Sam in November.

We have an referral to get his mouth cyst looked at with the Children’s Hospital group. The hernia repair surgery should be scheduled soon, as he’s reached the age the surgeon was hoping for with no further issues. His mystery rash is probably the leftover of whatever caused his pinkeye and is a good sign especially since it wasn’t accompanied by fever.

His doctor thinks this is going to be a bad, bad cold/flu season though so there will be lots of rules to follow. Whatever we have to do to keep the little dude’s lungs developing well and healthily is what is going to happen.

The basics: if you or anyone in your household has been sick/has the sniffles please let us know and stay away, lots of handwashing and sanitizer will be required, any adult caring for Drake needs to get this season’s flu shot and a whooping cough booster. We won’t be taking him to church, the store, restaurants, or any large gathering of people (including large family events) where we can’t control exposure. I know everyone wants to cuddle and hold him, but I will be keeping who’s allowed to do this to a minimum as well. There will be plenty of hugs and cuddles saved up for April.

Please respect our rules. They are for our son’s well being, and they are hard on us, too. I don’t think anyone wants to see Drake go back to the hospital for something totally prevantable with precautions.

In the spring, we’ll celebrate making it to the healthy finish line with Drake’s baptism. 🙂

We really, really thank everyone for their love and support. It’s hard to believe 6 months have already passed.